Watching a Meningioma Brain Tumor

I had a right frontal lobe meningioma in 2001. Because of the size of mine (5cm, about the size of a small orange) I was also told that it had probably been there for at least 20 years. I found out about mine by having a grand mal seizure out of the blue. Because it caused a seizure and because there was no way to know if it was benign without surgery, I had mine surgically removed. Fortunately it was benign. I had two small recurrences in 2017 and had gamma knife radiation on them at Mayo in Rochester. How did your doctor know it was benign? Did you have a surgical biopsy?

I’m reading through these comments since I’ve been diagnosed with a benign right frontal lobe meningioma. They say that from two different CTs that the tumor has been there some 20 years judging by the calcification formed around parts of it. I can’t have an MRI due to my pacemaker, so that eliminates closer examination. My neurosurgeon recommends the wait and see mainly because the tumor has been there so long. It was found accidentally while searching for a reason for severe jerking of my body all of a sudden, then continued episodes of one part of my body or another. This, along with a “full” feeling in my head and mild headaches. Finally diagnosed with myoclonus, but still no source of where it’s coming from. Hence, the brain CT and discovery of the tumor. The wait and see has me pretty jittery because it doesn’t make sense that there’s something taking up space in my skull that shouldn’t be there and why shouldn’t it be removed. Just sign me “waiting “

Benign left frontal convexity/parasagittal here. Wait and watch. It’s unnerving. Calcified, also.

@tonj657716, I can imagine that you feel miserable. When you go for your consult on Sept 18, let your doctor know that you're scared and that you've been suffering from depression, anxiety and panic attacks. Your team can help you get the support you need to see this through. You're not alone. Perhaps @mrector @kmart and @pegorr can share some of their experiences with you.

While we wait for others to join the conversation, You might like to read this conversation.
- Life: How do you not let a brain tumor take over your life? https://connect.mayoclinic.org/discussion/life/

Is your upcoming appointment a consult for surgery?

I have a 3.1 cm frontal convexity menginoma with exerting mass effect! I have terrible pressure in my head my arms and legs are week i have ringing in my ears! Head continuous! I go back Sept 18th hoping he will take it out! I am miserable! Depression anxiety and panic attacks! Im scared of the surgery though! But tired of feeling like this!

Hi @angela66, welcome to Mayo Clinic Connect. What an amazing story. While you don't know that name of the Mayo neurosurgeon who kindly helped you get a second opinion in your home country, I will share your story with the department to show the impact of going above and beyond. Watch and wait can be the right course of treatment. In your case, your instincts were right. It was time for action and thank goodness you took it. How old is your granddaughter now? Did you have any treatment after surgery?

Colleen
I am new to the connect mayoclinic group discussion here and I am from Canada
I was diagnosed 12 years ago when I was 41 with a right side parasaginal meningioma that when found was about 2cm however I was symptomatic
I was told to watch and wait and did so for about 6 months but I had little quality of life and was experiencing personality changes
I got angry one day and turned to the web to answer my growing number of questions and fell upon the mayo clinic site
I actually called directly and asked to speak to a Neurologist or Neuro surgeon. My phone number was taken and within a few hours I was called back. Unfortunately I do not remember the name of the neurologist who returned my call but I will be forever grateful
He listened and asked questions and then advised me that if I was uncomfortable with what my Neuro surgeon had suggested to “ watch and wait” then I had every right to ask for a second opinion. He even supplied me the names of three Neuro Surgeons from my hospital here in Canada that I could call and get that second opinion from
I thanked him hung up and made my first call to Dr Hall at the Montreal Neurological Hospital. He took me seriously confirmed I was symptomatic and fast tracked me to surgery
After 7.5 hours of surgery a 6.2 cm (yes it had grown rapidly) grade I tumour was removed that had begun to attach itself to the falix the main artery of the brain which had I continued to “watch and wait” would have made the tumour inoperable
I am forever grateful for the day I finally got angry and landed upon your institution and who provided me sound medical guidance because I am here to talk about it and lived to see my grand daughter come into my world
If a patient is not comfortable with the “watch and wait” approach they should know and be encouraged to get a second opinion this is your life not anyone else’s